Strength inBoundaries
Personalboundariesareguidelines, rules orlimitsthatapersoncreatestoidentifyforthemselveswhatarereasonable,safeandpermissiblewaysforotherpeopletobehavearoundthemandhowtheywillrespondwhensomeonestepsoutsidethoselimits.Theyarebuiltoutofamixofbeliefs,opinions,attitudes,pastexperiencesandsociallearning(Wikipedia,the freeencyclopedia)
PeoplewithPWS haveaheightened anxietyandneed othersto setconsistentandconsistentlyenforcedguidelinesorboundariesforthemtofeelsafeandrespondappropriatelytowhatisgoingonaroundthem.Boundariesincludepositivebehaviourstrategiesthroughtheencouragementofdesiredbehaviourratherthanthepunishmentofundesiredbehaviour.BoundariesteachthepersonwithPWSwhat isdesired byyouand societyand howto communicate effectively.Anythingtaught must besimplystated,understandableandreinforcedina consistentmanner to minimiseanxiety.
UsingboundariesisimportantforallpeopleworkingwithapersonwithPWS.TheyaretoolstohelpreduceanxietyandpoorreactionsbythepersonwithPWStowhatishappeningorbeingsaidtothem.WhenboundariesarenotputinplacebyallpeopleinvolvedwiththepersonwithPWS,itisconfusingandproblematicforthepersonwithPWS.Lackofconsistentuseofboundariescancreatelonglastingdifficultiesforpeople with PWS.Boundaries keepusall “onthe samepage”.
Let’s remember how peoplewithPWS think...
1)FormostpeoplewithPWS,thereexistsconstant,life-longanxietyfromchoicestobemade,thethingstheyhearandsee,thespeedatwhichdecisionshavetobemade,theconstantdrivetoeatandinmanycases,thedesiretobe“thesame”asothers.Aswell,mostpeoplewithPWSareconcretethinkers!ThewordsyouuseandthetoneofvoiceyouusearewhatthepersonwithPWSwillhear.Veryfew can“readbetween thelines” or interpretan underlyingmeaning.Ifyouspeakloudlyorwithevenaslightlyannoyedtone,theywill“hear”thatyouareangry.Thiswillincreasetheiranxietyandmostoftenresultinanegativeresponse!Ifyoubecomeanxious,theiranxietywillalsoincrease.MakeeverywordcountbecausethepersonwithPWSwillhearallthe wordsbut maynot alwaysunderstandthemeaningofwhat issaid.Usingfewer wordsandagentlevoicekeepsyoucalmandstopsyousayingwordsthatcanbemisinterpretedorlatchedontoforanargument.Lessismore
2)ToomuchchoiceisconfusingforpeoplewithPWS.Limited,appropriatechoicekeepseveryonesafe.WewouldnotasksomeonewithPWS:“wherewouldyouliketogo,today?”Wemightask:“would you liketo seea movieorgoto thezoo,today?” Less ismore
3)Usingvisualguidesisalwayshelpful!ToomanyinstructionsareconfusingaspeoplewithPWShaveadelayintheirinformationprocessingabilityandoftenmissbitsofwhatissaid.Displayingpicturestodescribeataskofseveralstepsmakesthe processeasierto understand.Forexample:washinghands-apictureis
easiertounderstand,learnfromandrememberforpeoplewithPWS.RememberthatpeoplewithPWShaveenhancedspatialpatterningskills–theytakeinthewholepatternataglance!
Theearlierinlifeboundariesareestablished,theeasieritisforthepersonwithPWS.Bythetimeadulthoodisreached,manyparentsareexhaustedbytheconstantPWSmanagementtheyhavehadtopractise.Someparentsalsofeelthatasthepersonisnowanadult,thingswillchangeortheyshouldhavetheabilitytoberesponsiblefortheirownbehaviour,andboundariesthatwereconsistentlyinplacewhentheywerechildren,cannowberelaxed.WeknowthisisnotthecaseforpeoplewithPWS.Theywillalwaysrequireconsistentbehaviouralmanagementstrategies,including firm, clearboundaries,whichwillbeconstantlytestedbythepersonwithPWS.Iftheythinkthereisanychanceofbreaking themdownthey willpersistevenmoreso.Onceboundarieshavebeenloosened or thepersonwithPWShasexperiencedthefreedomofminimalornoboundaries,theirworldgraduallystartstofallapart. Itis thensomuch harderto reinstatethe boundariesthathadpreviouslykept themfeeling“safe”andhadreducedbehaviouraloutbursts.AswellasrespectingtheindividualwithPWSwemustremembertoalwaysrespectthecharacteristicsofthesyndromethatwillnotchange.ExpectationsforthepersonwithPWS mustremainrealistic.
Reinstatingboundariesishard,butnotimpossible!Generally,acatalystwillhelpprovideaplatformfromwhich tointroduce change–thatis,bychangingthenon“bounded” environmentback to onethatis“bounded”.Writingupneworreinstatedboundariesintheformofacontractcanbeveryhelpful!Simple,clearexplanationsastowhytheboundariesarenecessaryareessentialandifpossible,canbesuggestedbyadoctororotherprofessionaldetachedfromthefamily.
BasicboundariespractisedforchildrenwithPWS,forexample,aroundtheregularityandquantityoftreatfoods,willstillapplyto adultswith PWS,however,theimplementation oftheboundariesmayalterfortheadultwithPWS.Boundariesneedtobereviewedfrequently,tomaintaintheirappropriatenesstotheindividualandtheireffectivenessineachperson’ssituation.Boundariesmayneedtobeadapted
todifferentstagesinlifeandchangedcircumstances–forexample,duringthetransitionperiodfromschooltopostschoolprogramsorfroma“community”programtoaworkprogram.
Beaware ofchangesinboundaries,especiallythosethat sneakinto theperson’susual lifestyle!
Parentsaretheinitialandmostimportantboundarysetters,astheyknowtheirchild(youngoradult)betterthananyoneelseandtheyhavebeenthekeypeopleinthelivesoftheirchild.WhenanadultwithPWSstartsattendingprogramsindependentoffamilyitisoftenseenasanopportunitytodevelophis/herindependence.Parentsmay,oftenreluctantly,stepbackfromtheirroleasboundary-keeper,astheyallowcaregiverstodevelopaworkingrelationshipwiththeirpersonwithPWS.Thisiswhenboundariesmayberefinedforthesituation,buttheirnecessitystillremains.
Aparentwrites…
Shouldthebreakingofboundariescarryconsequences?
Consequencesemphasisetheimportanceofboundaries,butdopeoplewithPWSlearnfromconsequences?Weallknowthatfoodwillbeeatenifaccessible,nomatterwhat,andthathaving“punishment”typeconsequencesaroundtheeatingofunplannedfoodisnotfairforpeoplewithPWS.However,havingappropriateconsequencesforknown,discussedandunderstoodboundaries,canbequitepowerful.Theconsequencesmustalsobewellunderstoodandalwayscarriedthrough,shouldaboundarybebroken.Remember,thepowerofconsistency!
Forexample:
Peterlovesbowlingandusually goeseveryweek.There isacakeshoponthe waytobowlingandon oneoccasion,whenhewasbeingtakentobowlingbyacasualstaffmember,hemanagedtogetthemtobuyafruitbunforhim.Hisreasonwasthathehadnoteatenallofhisbreakfastandwasfeelingalittle“weak”.Thestaffmemberwasrebukedforallowingthis,asitwasnotPeter’sschedulebuthecanbeveryconvincingtounsuspectingnewstaff!Eversincethisevent,onoccasionswhenPeterisinabad
mood,hewillstoponhiswaytobowlingandtrytoconvincethestaffmemberaccompanyinghim,thathereallyneedsafruitbun.Inmostcasesheisremindedofthe“boundaries”butsometimeshewillbecomeveryagitatedandonrareoccasions,afullblowntempertantrumwilloccur.Hisstaffhasnowimplementedtheconsequenceofreturninghomeimmediately,shouldhe becomesagitatedconcerningthecakeshop.Sohedoesnotattendbowlingthatday.Thefrequencyofmissedbowlingdaysisverylow,asheis remindedofhowmuchhe enjoysbowlingeachnightpriortohis plannedattendance.
IsittheboundaryortheconsequencethathasimprovedPeter’sbehaviour near the cake shop?Possiblytheanswer isthe combinationofboth.
BothexamplesituationshighlighthowimportantitisforallfamilymembersandcaregiverstobewellinformedaboutPWSandtheneedforpeoplewith PWStohaveconsistentboundaries.
Themosteffectiveboundariesarethosethatareseen,bythepersonwithPWS,tobebeneficialtohim/her in some way, ortobeacceptabletoanintelligentperson, suchashimself/herself.
Whatkeepsaboundaryeffective isthebelief initsworth and the consistentpracticeofthat boundary.